Posts tagged ‘PTSD’

I Won’t Wear That to Church Anymore

I’m just returning from church.  I go to an inspiring, welcoming church, which I love!  Everyone is friendly, and we make a special effort to include people with disabilities.  We have pew cut-outs throughout the church for people in wheelchairs.  (After all, just because you are in a wheelchair does not mean you want to be relegated to the back row, or, even WORSE, the front row.)  We have a sign language interpreter and large print materials for the church service.  If a person who is totally blind attended, we would no doubt get the materials in Braille.  People with developmental disabilities, as well as people with mental illnesses are welcomed with open arms.  Having the children I do, it has been a God send (literally) for our family.

The congregation members help out during the service in many roles, and today I was helping to serve the Wine.  The people serving communion stand on a step while serving the bread and wine.  Learning from an earlier experience when I fell while trying to get a group together for a photo, I always firmly grip the hand rail while walking down the few steps. (Falling while taking a picture is understandable, but more care needs to be taken with the wine. I am sure it would stain the carpet terribly!) When offering the wine to the congregation members, I frequently have to bend over because I am tall and on a step, and they are often shorter.  Today, after I bent over the first time, I noticed that my shirt parted from my body in the front, and everyone had a clear view down to my belly button. (Well, they COULD have seen my belly button if my big breasts had not gotten in the way.)  I was mortified!  While I do not embarrass easily, once I notice something askew, of course I have to fix it.  So, I did the only thing I could do under the circumstances; I squatted for each person.  Do you know how incredibly hard it is to hold a squat at one particular level and then move that squat up or down depending upon who was next?  If I were athletic, it may have been easy.  But I’m not…    I felt like one of those baby crib toys, all scrunched up (squatting low) and then being pulled straight, (standing tall) and while music plays it slowly moves up to the low squat again.That’s the way I was today; up and down and up and down all to the beat of the choir’s music.

I will never wear that shirt to church again…

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Link to my book

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

“All she does is screech and say No! No! No!”

 

The above description fit me perfectly.

Yes, me… perfectly.

Marie came to live with us at the age of 6.  She had been picked up off the street at 4 in the morning, barefoot, in her underwear, looking for food.  We took her in as an emergency foster placement because I knew American Sign Language and Marie was deaf. She looked like a wild animal…disheveled, matted hair, flaming eyes of distrust, so filthy everywhere that even an hour in the tub did not wash off all the grime.  Her teeth were dingy yellow, and her body was emaciated.  Being the “good” middle class mother that I was, I cleaned her as best I could and then I took her to buy some clothes.

In the store, she immediately disappeared.  I impulsively called her name, (as though she could hear me.)  When I finally found her, she was in the candy aisle, shoving candy bars into the pocket of her pants.  I screamed,  “No! No! No!”  She looked at me and ran in the other direction.  I finally tracked her down in the pet aisle, just as she was about to open the cage to the hamsters.  I screeched and said “No! No! No!”, and proceeded to grab her, pick her up, empty the candy bars in her pocket, and tote her back to the car without buying anything. If I thought this would teach her a lesson, it did not.  She was not used to buying anything, so she could not appreciate something she never had.

We ate out for lunch at McDonald’s.  Marie ate her sandwich and drank her milk and threw the wrapper and container on the floor.  No! No! No!

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The next day I gave her a stern talking to (“signing to?)  and told her that we were going shopping for clothes and that she needed to stay with me. As though THAT was going to work!  As soon as we got into the mall, a place she obviously had never seen before, she skirted UP the DOWN escalator, laughing with glee.  Mortified, I screamed and said No! No! No!  and then watched in horror as she slid down the banister of the escalator.  Big scream! No! No! No!  Home we went. 

Once at home, she got an orange to eat.  She grabbed the butcher knife to cut it and I screamed and caught her hand just as it was about to demolish the orange. No! No! No!

The next day we were going to take a walk to the library.  She broke free from the grip I had on her hand, and ran across 4 lanes of traffic. Scream! No! No! No!

Later in the evening, while watching television, Marie climbed onto my husband’s lap, where she attempted to rub his “private parts” and kiss him.  SUPER BIG SCREECH!  No!  No! No! Oh!  This child was so “bad”!  WHAT was I going to do with her?

At the end of the week, I went to Marie’s school where she was part of a dance performance.  I was glad to be able to be there, as her birth mother had never been seen at the school before.  I watched with pride as she danced and twirled, often sneaking a peak at me to see if I was looking.  When the dance was over, I saw her talking (signing) with another student who commented that Marie had a new mom, and how did she like her? Marie looked over at me for a minute and crumpled her nose, telling her that all I ever do is scream and say No! No! No! I was shocked.  I had never thought of it before, but she was right!  I was so busy chasing and correcting her that it would seem like all I did was scold her.  And what was I scolding her for?  For what I, as a middle class mother, think is wrong.  I had never taken into account that Marie had been raised to do all of those things…to steal food, to take what she wanted from stores, to litter, to be sexually promiscuous (at the age of SIX!) and to have no worries about safety, thinking she was invincible.  This young child, who had lived on the streets and managed to survive without any parental care, just parental abuse…WAS invincible! She did what she needed to survive.

I was so embarrassed. Embarrassed because I was judging her by my standards and not stopping to think of what her standards were.  I vowed never to scream No! No! No! again, but to explain things in a loving manner to her.

We do not steal.  If you want something, I can probably buy it for you.

We do not run into streets with cars, use butcher knives, or slide down escalators.  It is not safe.

We do not just throw garbage on the ground, but in our family we pick it up and put it in a garbage can.

And, most of all, there is no need to make money by being “friendly to men”.   We have plenty of money so you don’t have to do that.  And it is not fair that you had to do that instead of just being a little girl. And you never have to do that again.

Marie did not change overnight, but each time she would fall back onto old habits such as stealing or being unsafe, I would lovingly explain why she no longer had to do that.  She had a family that loved her and it was our job to keep her safe.

Then there was the time when, walking in the mall with a soft drink in her hand, she unwrapped the straw and threw the paper on the ground. My eyes widened, and she laughed when she saw my reaction.  “I was just teasing you” she signed.  “I know I don’t litter in this family….” 

No more screaming from me…

 

 

Link to my book  The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

 

 

 

 

Beyond One’s Own Problems

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I work with a social/educational/recreational group for teens with disabilities.  When first getting this group together at the beginning of the school year, I asked them what they wanted to do as part of our program.  Every single one of them said they wanted to “help other people”.  Here are students with a variety of disabilities and medical needs, and they wanted to help others! They were mature enough to look beyond their own problems to the problems of others.

Various suggestions were tossed about; opening a soup kitchen, visiting with the elderly in nursing homes, working at the local pet shelter, and so forth.  I suggested the easiest thing to do would be something we could do as a group within our program.  They chose making sandwiches for the homeless.

Every other Saturday we meet.  Yesterday we had some social skills activities, some recreation, (does anyone remember the game Simon?), and then they all baked cookies and made sandwiches.  As they were working, they chatted happily, teen music playing in the background.  When one song came on, they all broke out into what I call “dancing like you are riding a horse”.  (I am sure all teens will know what I am talking about, even if parents don’t.)  As soon as the song stopped, they all went back to their sandwich making. It was hilarious!

They worked as a team and made 165 sandwiches and twelve dozen cookies. As they worked, they talked about who might get to eat them, what kind of bad luck may have fallen upon that person and so forth.  They talked with much empathy, and not once during their conversation did they mention their own problems.  They were caring about the problems of others.

After the sandwiches were made, I drove up to Traveler’s Aid, a local spot where the homeless hang out.  The kids got out of the car to bring the sandwiches and cookies in.  They helped each other.  One girl in a wheelchair held a box of sandwiches on her lap while a girl who is blind held onto the wheelchair as her sighted guide.  (Instead of a using a guide dog, she was using a guide wheelchair!)  I stood back as they went into the building and delivered the goods. They were so proud.  The large group of people milling about parted like the Red Sea, and left them easy access to the front desk where they would be dropping the food off.  They walked and wheeled to the front desk which, fortunately, was wheelchair accessible.  The crowd murmured appreciatively, politely, thankfully.  The kids faces beamed as they turned around and came back to the van.  They were no longer disabled, but capable of helping others.  Suddenly, their problems were not as bad as the people who thanked them; people without shelter and food.

 

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

I Have Raised My Children Right in The Most Important Area

I am sure that every parent questions how they have raised their children. I know I have.  I have not been strict enough in making them eat all of their vegetables and clean their rooms, (mainly because I don’t eat all of my vegetables and clean my room.) I know to some people  this is a major parenting faux pas.  However, I have raised my children right in the most important area…caring for others.

I volunteer with a recreational group of adults with and without disabilities.  We have a bowling league, then go out to dinner together, then have an activity at night, such as Bingo, Family Feud, or a visiting musician.  All of my children have come with me to this group,  starting with Francis when he was a baby and the group purchased a portable crib so I could bring him camping with us.  My children have been raised socializing with people with disabilities so that any disability is not knew to them.

Angel, my son with Dissociative Identity Disorder, has been my latest child to attend with me.  One of his “peeps” (as his calls his “parts’) I call the Game Show Host.  Angel is the one who calls the numbers for Bingo, or reads the questions for Family Feud.  He is hilariously similar to a game show host, right down to kissing the female “contestants” during a game of Family Feud. From the minute he starts an activity to the minute he finishes, we are all in stitches laughing.  Silly laughing.  Innocent laughing.  Heart beating fast with cheeks that hurt from laughing laughing. He is terrific, and I am so proud that he has learned to manage his disability in order to make others happy.

The happiest moment of all happened on Christmas Day.  All of our family festivities are on Christmas even, and Christmas Day is always a lazy one for us.  In fact, the children and I usually go to the movies.  Angel asked if it was okay if he invited a friend to the movies, and of course I said yes.  When we got there,  waiting for us expectantly, was Lisa, a 65 year old woman with a disability; the “friend” which he had invited.  She was dressed for Christmas…Christmas sweater, Santa Claus earrings, a Santa Hat and bright red lipstick. She was glowing as she hugged us all.  It seems that she has no family and had sat in her apartment alone for Christmas Eve.  Somehow Angel knew this, prompting his request that she come with us on Christmas Day.

We all laughed at the funny movie, and enjoyed a large popcorn, (mmmmmmm…movie theater fake butter popcorn!)  After the movie, we went out to a Chinese restaurant for dinner. (Duh!  Chinese restaurants are open…)  We had a lively conversation about anything and everything funny, and she beamed the whole time.  When we left her outside at her car to go home, she burst into tears.  She thanked us profusely. She said she was so lonely at Christmas, when everyone else had a family, that she had contemplated suicide because she had no one.  She said this was her best Christmas EVER!  Try as I might not to, tears slid down my cheek also.  Tears of sympathy for her and of pride for my son…a son who is seriously disabled himself, but who was still able to find the ability to care deeply for the feelings of this wonderful, lonely woman.

Yes, I have raised him right…

A Hug Award; My Kind of Award!

I am not one to generally accept awards.  I am pleased to receive nominations, but I do not generally post the award.  I strive to stay level headed and an every day person.  (Awards would tend to inflate my ego and I may start to sound “uppity”, which is not in my nature.)

However ,Michele Kearns who has the inspirational blog Joy Returns, nominated me for a very special award:

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The HUG Award© was initiated by Connie Wayne at A Hope for Today athttp://ahopefortoday.comwhich promotes hope, love, peace, equality, and unity for all people.

The HUG Award© is for people with an expectant desire for the world, for which they:  Hope for Love; Hope for Freedom; Hope for Peace; Hope for Equality; Hope for Unity; Hope for Joy and Happiness; Hope for Compassion and Mercy; Hope for Faith;Hope for Wholeness and Wellness; Hope for Prosperity; Hope for Ecological Preservation; Hope for Oneness

The HUG Award© recognizes and honors those who help keep hope alive in our current world, which is plagued by war, natural disasters, and economic recession.  They nurture hope, in any of the above areas (in italics),  by the work they do, or in their personal lives with things such as blogging, public speaking, charity work, etc.

The HUG Award© is for anyone, anywhere in the world, who meets the guidelines and wants to be nominated for the award. Please leave a comment on this page if you are interested in receiving this award, or if you would like to nominate someone else for the award.

The HUG Award© is for people who, without giving up or compromising their own religious, spiritual, or political beliefs, are able to nurture hope and respect the dignity of all people.

The HUG Award© is for those who, without bias or prejudice, use their resources and gifts to make the world a better place for everyone.

The HUG Award©is for people who have a hope or an expectant desire that the work or talents they use in things such as blogging, public speaking, charity work, etc., will make a positive impact on the world.

These people do not have to actively use the word “hope” in their work or creative talents.  They only need be conscious of their desire to make the world a better place for everyone.

These people use their available resources–a smile, a hug, a helping hand, a listening ear, a voice, time, money, possessions, education, personality, talent, websites and blogs—to make a positive impact on the world and make the world a better place to live.

The HUG Award© is not a website or blog award.  It can be given to people in your community, at your employment, at your place of worship, etc.  Please make sure they have a copy of these Guidelines, and please don’t forget to submit their names back to this site.

I am pleased to share this award with everyone who strives for peace and to make the world a better place.  Is it such an honor, and little ol’ me is humbled.

A Whole New Meaning to “Swimming with the Fishes”

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

Angels Among Us

First blogged January, 2010

My mother passed away several months ago and it has taken me this long to write about it.  She was the most wonderful mother in the whole world, (and I am not just saying that because that is what one is expected to say about their deceased mother.)  In addition to being kind and loving, she was also very spiritual.

I remember when I was four years old and we lived in Opalaka, Florida, right behind the Hialeah Race Track.  We had a cement swimming pool in the backyard which my father built, and next to it was a palm tree my mother had planted crooked so it was growing sideways.  I had a green parakeet whose name I certainly don’t remember, and I loved watching Howdy Doody and Captain Kangaroo on our little black and white tv with the rabbit ears antenna.  My brother was born one day in March, and life suddenly changed for our family.  My brother was born with serious disabilities due to Rubella Syndrome, (supposedly my mother had been exposed to someone with German Measles.)  With a cleft palate, he could not nurse or drink from a bottle, so he was fed by a large eye dropper. He could not such on a pacifier and he cried constantly.  He was blind and deaf and was obviously going to be severely developmentally delayed. My joyful childhood was suddenly overshadowed by a sadness of which I had never seen from my mother.  I would witness her throw herself across her bed and sob. A deep sadness enveloped our family. I looked at my little brother, who looked so innocent and little to cause such a fuss.

One day, when the sun was shining brightly and Curtis was asleep, my mother called to me to come sit in the rocking chair with her.  She squeezed me and held onto me tightly, rocking  and crying.  It was a different kind of crying, though.  A happy cry, if I could describe it as such.  From that day on, the gloom lifted from our house and I went back to living my happy childhood with my new baby brother.

Many years later, when I was a young teenager, my mother shared her experience of what happened to her that very day.  The doctors had been encouraging her to put my brother “away”, institutionalize him as was the custom in those days. “Forget about him,” they said, “You can have another child.”  She could not bear to make the thought of doing this.  Then, on that sunny day while rocking in her chair, she told me she was visited by an Angel, a beautiful, bright white Angel.  She told me she could feel the weight of the Angel’s hand on her shoulder, reassuring her that everything was going to be okay.  Although the Angel did not speak, she knew what the message was.  She did not have to worry anymore, her son would be fine, and he was.  He wasn’t fine in that he suddenly became perfectly healthy, but he was fine in that he has led a happy, fulfilling life. Clearly, she had been touched by something spiritual on that day to turn her torrents of tears into smiles of joy over her new baby.

Several years later, while camping high in the mountains, my mother woke up from her sleep and sat up in her sleeping bag.  She was joyous!  She told me she had been to see God, whom she described as a bright and beautiful. She said it felt real, not like a dream at all.  She was confused as to the experience because it seemed as though she was there to help a friend pass over into heaven.  She did not understand because of course her friend was healthy.  It was not until we returned home from vacation that she learned that this friend had died from a brain aneurysm on that very night at that very time.

My mother lived a life of  great happiness and contentment, always seeing the good in people.  Near the end, right before she died, I stayed with her 24 hours a day.  When we knew death was near, the nurses let me lie in bed with her and she passed away in my arms.  I don’t know what I expected when she died.  No…that’s not true…I expected to see some of what she had experienced!  I expected to see her pass into heaven!  I expected there to be some reaction from her body, some knowledge that her lifetime of spirituality would somehow, through osmosis, pass through to me.  But there was nothing.  She just stopped breathing. And there was nothing.

It took me a while to accept her death, and I became angry that there was no sign from God that she was with him.  Realistically I knew this was silly, but I was hugely disappointed.

Christmas time came soon afterwards.  As the parent of 5 children, I had this habit when the children were younger of taking a picture of their sleeping faces on Christmas eve.  As they aged, they hated the existence of these pictures!  (They were usually sucking on a “binky” at the time and girlfriends and boyfriends who saw the pictures in old photo albums would always go “Awwwwwwwwwwww, how CUTE,” the most mortifying thing that could happen to a teenage macho boy!)  This Christmas eve, filled with nostalgia, emptiness and sadness,  I again went into each of their bedrooms and gazed at their sleeping faces.  I was suddenly filled with a great sense of purpose and contentment, much like the type of contentment my mother might have felt when she felt the Angel’s hand upon her shoulder.  These were MY Angels.  These were my children who had endured so much when younger, either with their disabilities or with indescribable child abuse. They have not only survived, but they have THRIVED.  They are happy and loving and successful and they have bright futures as adults.  This is miraculous to me!

Another Prom Mis-Disaster

I wrote a while ago about the damage I did to my daughter, Dinora’s, prom dress eight or nine years ago.  I miscalculated my ability to hem such a delicate item (ON the day of the prom when she told me it was too long to go with her shoes…after weeks of my asking….) The hem was crooked and the dress was gathered in places it should be gathered! I was saved from the humiliation of being a terrible mother by a local taylor who miraculously fixed my mistake, leaving her prom dress in pristine condition.

Well, my youngest daughter, Marie, who is deaf,  is going to a prom next month.  This is the daughter who has always preferred to wear male clothing, even men’s bathing suits!  Her theory is, if she dresses like a boy, no one will think she is a girl, so no men will “bother” her…  She, of course, does not realize that at sixteen years old, she has developed in such a way that men’s clothing can no longer disguise the fact that she is a girl.

Marie had a talk with her counselor, and she actually decided she wants to wear a prom dress, which would be the first DRESS she ever wore.  She was mortified at the thought of a short dress, but warmed to the idea of a full length gown.  So, last weekend I took her shopping for a prom dress, every mother’s dream activity to do with her growing daughter. Again, my dream activity quickly turned to a nightmare, but then I was again saved from disaster.

The day started out fine as we went to the mall.  Marie led the way to a major store she knows I have a credit card to.  (Thus my laments that I “have no money” would be moot to her.)  The gowns were dazzling bright with sequins and frills, but not enough fabric to cover Marie’s “growing” body.  She ran from rack to rack, picking out modest gowns to try on.  Looking at the size 11s, I knew she was not going to fit into them.  In the dressing room, she kept asking me to help her zip them up.  I tried to explain to her they were too small, but she accused me of not helping her enough!  We had an argument in the dressing room and she flew out in anger.  We walked the length of the mall with her seething inwardly, when she spotted JC Penney, another store to which I have a credit card.  We found the prom gown section, and BLESS this store…they had gowns all the way up to size 19/20.  Marie, in her glory amongst the choices, found what she thought to be the perfect gown and they had it in her size.  It was white with rhinestones and layers of ruffles and her eyes glowed happily as she tried it on.  She looked like a bride and my eyes filled up with tears. I thought of the despair we felt as she left the previous store without a dress, and the joy we both felt as she found a dress to fit her.  I say thank you to those stores who have clothes of all sizes for teenagers, especially JC Penney’s, which enabled one sixteen year old girl who is deaf to move one step closer to her date at the prom.

Volunteering is a Gift You Give Yourself

Volunteering is a gift we can give ourselves that can also improve the lives of others. It is a win-win situation with huge implications for both parties. When I volunteer or do something nice for someone I feel happy, almost to the point of giddiness. Before the invention of the Fast Pass for tolls, we would often pay the toll for the car behind us. My children and I would giggle about this gesture, a cheap happiness booster for only $1.00!

I have to admit that all of my volunteer efforts are completely selfish, starting with the adoption of 4 special needs children. People who say I’m “a saint” or “so very special” for doing this are completely wrong. I do it because it benefits me. I get 4 wonderful, if not troubled, children to love and who love me. Despite their many problems, I know that if they were anywhere else, their problems would be much worse. Seeing any improvement in them is a joy, and knowing that I had something to do with that is extremely satisfying. Additionally, I HATE to clean house, so if I have the work of caring for 4 children, then I certainly don’t have time to clean. See? Win-win for me!

I have volunteered with a recreational group of adults with disabilities for 30 years. It is a wonderful group! I do not have to worry about wearing make-up or dressing fashionably because they accept me as I am, as I care for them. I have 50 great friends! We have a bowling league every Monday, and an activity to follow, such as Bingo, a guest speaker, chair dancing, Yoga just to mention a few. We take 2 inexpensive trips together annually. We have been to Disney World, Penn Dutch, New York and Radio City Music Hall, Niagra Falls, Montreal, New Hampshire and more trips too numerous to mention. This is great for the organization’s members because they can have the support they need to travel. I make the arrangements for a motor coach with a wheelchair lift so that our friends in wheelchairs are able to join us. We stay at accessible hotels. The group is great and helps each other, thus proving my theory that almost everyone can volunteer. We have people who are blind who push people in wheelchairs. (The person in the wheelchair acts as the sighted guide!) We have people who are deaf who are sighted guides for the blind. We have people who are developmentally delayed carrying bowling balls for individuals in wheelchairs. It is a wonderful, supportive group. We send each other birthday cards. We have a great social outlet that is entirely dependent upon volunteers. We are so “tight” that when I was pregnant with my oldest son, they threw a shower for me, and they gave me all items I could use so I could bring my son on trips with them…portable crib, stroller, travel size baby lotion and baby powder. At the age of 4 months, my son first started attending this group, and he traveled and volunteered with us until he was a teenager. When my other 4 children were adopted, they similarly came with me and this group, and volunteered to the best of their ability. They loved to help the developmentally delayed play Bingo, and they delighted when their “friend” won! They have learned to be happy in the success of others. They have all provide sighted guide assistance for the blind, pushed wheelchairs, carried bowling balls and assisted in any way needed.

My children have been raised to be conscious of the needs of others. My older son, Francis, is legally blind. That did not stop him from volunteering. In high school he became and Eagle Scout by organizing a collection of 5,000 pairs of eyeglasses which were donated to the local Lions Club. He volunteered at a local child care center and loved playing with the little children. He was an assistant Sunday School teacher and a volunteer annually at a camp for the blind and Bible School. In college he volunteered out of state several times for Habitat for Humanity. He might not have been able to see to pound in a nail, but he was strong and completely capable of carrying heavy materials and helping to hold walls up. He also helped to coordinate several food drives and walk-a-thons at his college. Currently, after obtaining his PhD from Cambridge University in England, he has his dream job of designing computers for people with disabilities.

My daughter, Dinora, adopted at an early age from Guatemala also joined us weekly and on trips with the recreational group and she also was an Assistant Sunday School Teacher. She and I did some fund raising to help open the soup kitchen, Tus Manos, in Antigua, Guatemala. Her most rewarding adventure was to spend the summer after high school graduation in Guatemala to help open the soup kitchen. I was there on the actual opening day, and the joy was overwhelming. Dinora had on an apron and a huge smile as she passed out food. She made sure to make eye contact and was friendly with everyone by giving them a pat on the back. Even the individuals who were disheveled and barefoot coming through the line with their eyes glancing downwards were rewarded by the accepting, compassionate friendliness of those passing out food. When they left the line, tray of food full, their eyes were looking upwards, often filled with tears. Dinora said to me she was thrilled to come and help out “her people” because she had led such a privileged life and they had not. I had brought with me a collection of new flannel shirts (on sale so cheaply I could not pass them up.) Dinora and I passed them out and the men, in tattered clothes, would humbly bow and thank us. It was a wonderful, uplifting trip. We traveled in a beautiful country and met many beautiful people who touched our hearts forever.

My son, Steven, who has Attention Deficit Disorder, Asperger’s Disorder and Obsessive Compulsive Disorder also attended the recreational group as an infant and toddler. Despite his disability and limited social skills, he developed compassion for people with all types of disabilities from all walks of life. When he was about 8 I remember traveling with him in downtown Boston where there are many beggars on the streets and in the subway. That child had to give money to each and every one! He gave out all of his own money and then asked me for more. As we were about to get on the last subway he saw a disheveled man playing the guitar and he asked for more money. I had no more dollars to give and he said he couldn’t get on the subway until we gave this man something, so we both dug in our pockets to look for change, and managed to scrape up 37 cents which he ran over and put in the gentleman’s bucket. Now, at the age of 17, he uses his obsession with reptiles to volunteer at a reptile education center. He stands at the entrance with a huge boa constrictor, python, turtle or alligator, allowing people to pet the reptile and answering all of their questions. He may not be good at social interactions, but he found his own niche in which to volunteer.

Currently, my 15 year old son, who has Dissociative Identity Disorder from years of early childhood abuse, uses his “game show host” personality to call for the monthly Bingo game with the recreational group. He is HILARIOUS! He puts so much humor and energy into the Bingo games that this is their favorite activity. He also uses some of his own money to buy little Bingo prizes when he sees something he thinks they might like. In return, he gets their acceptance and love. He likewise calls Bingo games for a local nursing home. As a boy who desperately needs affection and acceptance due to his disability, it would normally be inappropriate for a 15 year old boy to hug adults. However his Bingo groups are comprised of many adults who have no family and no one else to care for them. They need his hugs and affection as much as he needs theirs. It is a win-win situation.  He also volunteers at his school as an “Autism Buddy”, a social group where the high school students provide activities and social interaction for younger children with autism.

My 13 year old daughter who is deaf and has Post Traumatic Stress Disorder and Attention Deficit Disorder loves to come to the recreational group so she can be a sighted guide. She has taken great pleasure in her ability to do this. She regularly guides women who are blind into the ladies room, showing them where the stall is. She has helped to feed individuals who need assistance, gently wiping their mouths if food drips down. She also volunteers in the same nursing home as my son. Her job, however, is to clean out the bird cage, (which she LOVES,) and to play Rummy with the residents. They are buoyed by her youth and enthusiasm and she loves it because she is helping.

Perhaps the greatest opportunity my children have had is having an uncle, (my brother) as a relative. My brother was born with Rubella Syndrome in 1951, He is developmentally delayed, legally blind, has a severe speech impediment and has a hearing impairment which has progressed to profound deafness. He became schizophrenic when he was 18, and this has gotten worse, with most of his conversation having to do with his rides on the Starship Enterprise. His head is greatly misshapen, he has only 2 teeth in the front, one side of his mouth droops down, he drools, and he has difficulty walking around and frequently trips without a strong arm to hold onto, My children adore him! He generally lives in a group home but I pick him up on Saturdays and holidays to spend a day with our family. He is greeted by a “Hi, Uncle Steve”, a hug and a smile by them all. The children are used to being a sighted guide for him, and will sometimes argue over who gets to do it. My brother is very easy to please. His greatest joy is riding the escalators at the mall, getting a diet coke and, to make it a perfect day, having a piece of cheesecake or a sundae. We took him yesterday to the mall, riding around for 1/2 hour on the escalators and going to the movies. He got his soda at the movies and afterwards we stopped for dinner and cheesecake. He was ecstatic! When we brought him back to the group home, he clapped his hands and told them it was the best day he ever had! Seeing someone so happy over simple pleasures is extremely humbling. Although caring for him is not in itself “volunteering”, it contains the same components. We do something to make his life better and we are rewarded by his happiness and joy. Money can’t buy the sense of satisfaction that brings to everyone involved.

In summary, to volunteer is a gift we give to ourselves as much as the gift we give to others. Most people, including children and people with disabilities, have the ability to volunteer. It is an extreme self-esteem booster and makes life much more fulfilling. I highly encourage it.

A Whole New Meaning to Swimming With the Fishes

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

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